Top Ten: Luke Update

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Another specialist, another on the brink of being fired and a rockstar dentist visit. I’d say we have lots to talk about in Luke’s world. Let’s get to it, shall we?

1. A few weeks ago, Luke had his first “real” dentist visit. I was very nervous. Luke is still very orally sensitive, so yeah, the dentist thing kinda freaked me out. For x-rays, we let all the other chicks go first and when it was Luke’s turn I plopped him in my lap and hoped for the best. The x-ray tech tried to put the films in his mouth and he gagged. Instant reflex, but I grabbed the film and asked her to let me try. It was a no-go. In hindsight, I wish I would’ve tried to begin with, because I think he might’ve let me put them in. But, you live and learn. He didn’t throw up and we didn’t scar him for life with a traumatic experience. It’s all about knowing the limits, right? I was beside myself giddy. For the cleaning, he laid right on that table and let her scrape and brush away. Y’ALL. That is HUGE news in the Luke department. I’m not ashamed to admit I teared up during the exam. If you’re a preemie mom and are looking for a rockstar dentist, I highly recommend Dr. Kelsey Bookmyer. They were so sensitive to Luke’s challenges and really let him lead the exam. They rock.

2. Luke is making pretty stellar progress in occupational/feeding therapy (OT). He has started doing something that I thought would take us many more months, he’s actually swallowing, on occasion, when we ask him to. Again, HUGE news. There are still a variety of textures that get a head shake, a scream and a “NO!” So we “back off, Jack,” as Will says. I’ve found it’s better to look at Luke’s eating progress in six month increments. That’s where we really see the progress. A year ago, he puked all over the table at my favorite restaurant when he SAW sugar. Yeah, that was *awesome* (sarcasm font). Six months ago, he sat there and didn’t eat a thing, but didn’t throw up. Just a few weeks ago, he put two pieces of food in his mouth and drank a few sips of water. #winning

3. The saddest news ever? We found out Luke’s gastroenterologist, Dr. Berhane, is leaving the practice. I cried big, fat, ugly tears with her nurse the other day. I really need to dedicate an entire post to this in a couple of weeks when I can type and not cry at the same time. She’s leaving for an awesome reason, but still. She knows Luke so well and his belly issues, while they’ve subsided considerably, are a lifetime effect of NEC. I believe he will always have a gastro in his life. So to lose her was a bit devastating.

4. Speaking of bellies, the diapers are still rank. Sorry, it’s our reality. I’m hopeful that as he begins to put more solid food in his system that we’ll see those change, but it’s going to be a while. Thank the good Lord I don’t have to even think about potty training for another year. Benefit of him being a fall birthday. He is nowhere near ready and for that, I am grateful.

5. Luke’s speech progress continues to amaze us. He’s very animated and it is so cute! The eating and speaking go hand-in-hand. While he still has a ways to go, the speed at which he’s catching up is just so crazy to me. We did lose his original speech therapist (insert very sad face here) and we now have to break in a new one. I met her last week and I think she and Luke will get along swimmingly, but it’s always hard to break in somebody new, especially when you’ve hit your groove.

6. Ugh, the pediatric orthopedic surgeon visit did NOT go well. My memory is not serving me well, but I don’t think I blogged about that ATROCIOUS visit. Nutshell? We waited nearly four hours to see a specialist, for the first time, for a whopping seven minutes. Seven. He quickly dismissed Luke’s need for leg braces and asked me to “hit the highlights” of Luke’s history. Here’s a suggestion, read the chart dumbass. (eek, I really thought it, but didn’t say it) I can confidently say we are now looking for a new ortho, preferably in Dallas or Houston. It’s not amateur hour, so if you know someone good, send ’em my way. Part of his assessment was spot on, and that is that Luke needs some PT to strengthen his core and his right leg. I’m increasingly concerned it has something to do with his tethered cord, but I won’t know that for sure until his neuro visit next month.

7. Speaking of his noggin, neurosurgery is up next. At his August visit, we will start making plans for his sixth (and hopefully final) surgery. I’m trying for December, but we’ll see what Dr. G has to say about my “plan.” It’s time for us to close Luke’s skull so it shouldn’t involve any actual brain tissue, praise the Lord. But, it will be a PICU stay at the place I love to hate, Dell Children’s. I’m trying to not think about that for now. And, of course we’ll discuss the wonky right leg, too.

8. Last week, we saw his ENT (boy, do I love his ENT) and confirmed that both ear tubes are no longer functional. He pulled the remaining one out (it was stuck in ear wax, eww) and then we conducted a hearing test. Luke passed with flying colors. The biggest news? We are now on yearly checkups. Cue the happy dance music! We are going to monitor any snoring we hear as that may indicate the tonsils and adnoids need to be surgically removed. There’s that fun word again. The next year will determine where we go, but I am hopeful that it won’t mean anything and we can fire Dr. C next fall. I mean, I love him, but another specialist needs to go. I’m trying to whiddle us down to one hand. So far, we’re still hovering at eight.

9. At his developmental pediatrician visit, she suggested we keep up the 2x/week speech and the 1x/week occupational/feeding therapy. She also was concerned about his fine motor skills, so we’ve been working on those at home. Yes, they concern me, but no I do not have time to dwell on them. We have some other pressing issues and my brain can only take so much at a time. Add in PT and we’re up to four therapies a week. I think I can keep pace with that through the end of the year and then we’re going to have to make some tough financial/emotional decisions. It’s my prayer that Luke will decide for us in that he makes such great progress we can cut some of them back. He’s getting close.

10. To sign off, the verdict of “watch and wait” still reigns for his kidneys and heart. September is the big specialist roundup, so I’ll report back more on those big organs then. I’ve chatted long enough.

Every day, EVERY DAY Luke just continues to make slow and steady progress. He’s funny, happy, laid back and busy. He is quick to smile and he is quick to let you know his take on the situation. Luke is such a miracle, truly, and I love being his mom.

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Comments

I LOVE the pictures of him with the sunglasses and headphones. So stinking cute!! I have a good friend who is a preemie mom, and I’ll check to see if she has any ortho recommendations. You were wise to write off that unbelievably arrogant doctor. First impressions are everything, and if that’s the best he has to offer then thanks but no thanks.

Kathryn, you’re doing it and it’s amazing. I will carry you, Luke, and your whole family in my heart and lift you up in my prayers. I remember those days filled with therapists and specialists, one right after another. Hugs and prayers.

HOWDY and welcome to life at Team Whitaker where I share life as it happens: big families, carpool, Catholicism,Texas Aggies, prematurity, DIY/organizing projects, sanity checks and the occasional glass of wine at 10am. You get real Kathryn. Unedited, honest and a little sassy. It's a Texas-sized honor to have you here! Contact me at [email protected]{Read More}